On Saturday I went to an all-day, informational event focused on metastatic breast cancer. There were researchers presenting the latest findings, nutritionists talking about food, therapists discussing coping, … all sorts of fun stuff! It was the third time I’ve attended this annual event. I’ve been living with MBC for 9 years now which is longer than many last, a point which became poignantly apparent. One fellow patient I chatted with said she was so encouraged to hear that I had survived so long … she was a newbie.
A month before my MBC diagnosis, my daughter was eleven, and she and I went on a trip to England. I rented a car to drive from London to Wales … the rental, of course, was a stick shift. I know how to drive a standard, but hadn’t in years, and I’d never driven one where the stick is in your LEFT hand. Never mind driving on the left and all. When we first set off, we went down a narrow street which ended on a very busy road. The British GPS voice said pleasantly, TURN RIGHT … making a right turn in England is of course like making a left turn here. I was looking at crossing two lanes of heavy traffic into another two lanes, while watching for buses in the bus lane, pedestrians on the sidewalks, and bicycles everywhere. I sat for a moment and said out loud, I can’t do this. A little voice from the backseat chirped up, YES YOU CAN, that’s what you always tell ME when I say I can’t do my math homework. Obviously I had no choice … six hours later we arrived in Llandudno.
For nine years I’ve doggedly remained positive … not because positivity extends life (it doesn’t) but because it makes life better. Of course, there are days when my mind thinks, ya know, I don’t have a lot of years left. Then my head says to my mind, yeah but we’re still talking in years, not weeks. My mind responds, maybe, but I’m not going to beat this disease, no one does. (Sometimes) my head replies, YES YOU CAN.
New plan: no more alcohol. I’m gonna test this plan until my next DF visit in November.
Since on Monday my tumor markers were up, even though only slightly up, it probably indicates my treatment is losing effectiveness … that’s been the rule in the past, once the trend changes from down to up, it’s not going back. Which means I will need to change meds again. Which s*#%*cks, because my body has been tolerating these meds really well and so far they’ve been doing their job.
I exercise religiously, eat healthfully, meditate daily, and have a fantastic support system. I figured the ONE place I could ‘cheat’ was drinking. Research shows that alcohol is not great for cancer, but since I’m not a heavy drinker, and because I love a good cocktail, I’ve been ignoring that particular data.
Tuesday, I called Aaron … come over for a last evening of drinking? I had a REALLY good bottle of champagne in the fridge and was NOT going to miss out on it! … It was D E L I C I O U S ! (thank you Pam : ) When Aaron was leaving, he said … well, looking forward to November when you can drink again!
Well … wait. If in November my numbers are steady I’ll attribute the good news to The Plan. The Plan could help slow the cancer! That’s the hope. On the other hand, if the numbers aren’t good … well, then, I’m going home and having seven cocktails! In the bathtub!
Today’s visit was neither terrible nor great. Numbers are heading up – not speedily, but yes up, slowly. So there’s nothing to change treatment-wise right now. It’s not an urgent situation. We’re waiting for two months — yay, two months without a trip to DF! In November I’ll have a CT scan and MRI. Blood numbers too, of course. We’ll see what it all looks like then and rethink.
I’m feeling okay about today. I had been expecting worse. Because of all the fun this summer it just felt like some shoe should be dropping! Well, not actually because of having a fun summer, but because it’s time for something to change. It’s the way cancer works. I’ve been on my current meds for over a year. I take really good care of myself to stay healthy as long as possible, but without a new miracle medicine or some divine intervention, my future is set. Flexible to a degree, but set. I’ve gotten used to it. I’m not all that different from everyone else on the planet … we ALL know we’re not getting out of here alive! (thank you Henry!)
When I was young I thought being hit by a bus was absolutely the best way to ‘go.’ No warning whatsoever. Now after living most of my life with chronic illnesses, I’ve changed my mind. Having time to know and to plan is fantastic. Like this summer! I checked so many things off my bucket list this summer!!! Ha! … Wait a second! Whoa, whoa. QUICK – it’s time to add more items to my bucket list. Open-ended items, lots of projects! Otherwise, if the list is all checked off, wouldn’t that mean it’s time to go?!!
Not now though. Hell no. My friend Alison’s kitchen project still needs me!
After the road trip, a week of rest was in order. (Not just for me, for my daughter too, which made me feel better : ) Then, onto the next project … CakeAllDay Day.
My birthday is August 20th… which this year was a Tuesday, and I decided to serve cake, all day. I sent emails before the road trip, inviting friends to stop by for cake any time between 10Am and 8PM. Such a fun idea? Yep. It was a totally fun day! Five different, decadent cakes: Flourless-Chocolate-cake-w-raspberry-sauce, coconut- layer-cake, carrot-cake-to-die-for, homemade-secret-recipe-cheesecake (thank you Carey), and yellow-layer-cake-w-chocolate-icing-and-mousse.
My high school bestie, now a Californian, was the first to arrive … surprise! Omgosh! Cousins from Boston came! Cousins from Connecticut, my sister from NY, and my nephew from Raleigh were all there! My college pal from Westchester, friends from the Cape, my awesome friends from RI! The day was long and fun and SWEET! And also exhausting. By post party cleanup time my sister, nephew, daughter, Cali friend, and I all sat around the kitchen stuffed and groaning. We each proclaimed that we would NOT be able to eat cake for a year.
The next morning we each snuck into the fridge for leftovers. Carrot cake seems VERY close to a bagel and cream cheese for breakfast, right?!
So, August 2019 … first the road trip … then CakeAllDay Day. The month felt like more good stuff than is possible. Then on August 31st Karen (my late brother’s best-friend-forever-girl-friend, my sister-sorta) arrived for our CAMEL WEEKEND. Labor Day at the zoo! We had a pre-planned camel ‘encounter’ — a private meeting with the camel Sasha, the camel keeper Kim, and a bucket of carrots which we fed to the amazing dromedary. This may sound like something for kids, but nah, this stuff is wasted on kids. We had a BLAST. We spent the whole Labor Day weekend eating, shopping, zoo-going, eating more, and shopping more. Ha!
Sometimes I think I’ve had more happiness than anyone deserves. Funny.
Tomorrow, Monday, is DF again. Wish I could claim no fear … perhaps, if I were a camel
Have been back home now for a week and a half. My daughter and I spent ELEVEN days together, mostly in a car. We didn’t kill each other, therefore the trip was a success! We flew from Providence to San Francisco, then drove down the Pacific Coast Highway to LA, and then headed east on the old Route 66 as far as Amarillo, Texas, before flying home. An amazing and exhausting 11 days.
This is my dining room wall showing our route (red line) with photos fanning out from roughly the correct locations:
In my mind this trip would be a summer whirlwind for my twenty-year-old daughter to remember fondly. And I think it was. Cancer didn’t come in to play too much during the trip, but OY my blood sugars were all over the map (usually at the north pole) so I showed my daughter how to check my blood sugar while I was driving. It was awesome to have a diabetes assistant! Hoping that’s not what she remembers most about the trip! : )
Here’s the Grand Canyon pic again, right side up:
And a few other pics …
We saw and did so many awesome things!!! Will we be able to do another trip? Dunno. Might not even be my health getting in the way of a future trip — could just be that one road trip with mom is enough : )
I was doing some online banking this morning and had to call the 800 number to finish up. This was frustrating — ended up having to call three different numbers, was given incorrect information, and wasted much effort trying to navigate the voice operated system. Ugh. Nope! Apparently we have to talk to an actual person to close an account. That person, John, immediately inquired about why I was closing the account and gosh wouldn’t I be interested in investment options from the bank? I decided to pull the cancer card: John, I said, I have CANCER, so, NO I am not interested in investing, I just want to close the account and spend the money.
Haha on me. The cancer card didn’t work.
John started telling me his own cancer story. He had had a tumor on his spine, was in a wheelchair, and his doctors had pretty much written him off. John decided to ‘make the doctors wrong.’ We spent ten minutes talking about various cancer details and things he used to help himself heal. John is now almost completely healed and the spinal tumor is gone … this is a cancer which was supposed to kill him years ago.
When you get a cancer diagnosis you automatically join a club. It’s not a club anyone wants to join, but there you are. Sometimes a fellow member shows up and startles you … often in a good way. And it’s interesting how a stranger can change your day, change your outlook, remind you about optimism. Thank you, John in Pittsburgh, for our conversation. And thank you for closing my account.
Just a quick update. Had a CT scan, an MRI, then bloodwork, meeting with NP, meeting with oncologist, and meeting with therapist. Squeezed in ten minutes of meditation during this schedule (because the APP TRACKS my daily diligence:) !!! Even managed to take a quick nap sometime in the there (much needed – i got up at 4:00 am to start this day!).
The bloodwork showed tumor markers down slightly (that’s the right direction). Scans showed that previous tumors on liver had shrunk a bit (that’s great!). But scans also showed a new ‘tumor-looking-spot’ on my liver. I suggested maybe it was a smudge on the film. NP said, sorry nah. I suggested a pumpkin seed lodged in my right lobe? I’ve been eating a LOT of pumpkin seeds, you know : )
Yeah, probably not a pumpkin seed either, but we’ll just look again in four months and see what’s happening. Nothing at all changes with my current treatment. Nothing critical.
Sooo, I’m headed to my FABULOUS bathtub. Can’t fathom anything better right now. Tomorrow, another day to plan forward!
This evening I was on the phone with my dear pal, and love, and sister-in-law, Karen, who, like me has not-insignificant health issues. Her’s are cardio … heart problems since childhood. She and I are both big believers in positive thinking and positive visualization. While positive thinking/imagery are sometimes written off as silly, ‘wishful thinking’, positivity can and does make one’s thoughts, one’s head, feel better even if not one’s body. (I believe it can do both.) But EVEN if only your mind and thoughts feel better, hell, that’s huge!
Tonight Karen admitted that she was just not able to see herself as being strong and robust … could not do the visualization. Ha, I thought, I’ve been there! Decades ago I remember thinking I’d never be able to handle diabetes gracefully. Was frustrated that I couldn’t imagine it and couldn’t visualize it at all. So, what I did instead was this … I visualized myself being able to visualize it (living a life with diabetes in control). It was my ‘visualization stepping stone’.
It worked. Not over night, but it worked.
Karen loved this! Loved the tactic of visualizing yourself being able to visualize. I had only ever mentioned this idea to my daughter, when she was a teenager, and of course, as a teenager she ROLLED HER EYES big time. So it never occurred to me that it could be of interest to anyone, even though it has worked for me many, many times.
I have more to write about hurdles and positivity, but wanted to get this written tonight, Sunday. Thursday is a big Dana Farber day — CT scan, MRI, blood tests, NP, and then oncologist. Woo hoo!
(And, quick update, hair is very FLUFFY with this summer humidity. : )
My next appointment at Dana Farber is July 18th. That leaves me oodles of time, right now, to document interesting tidbits from my past on this blog. And then I think, nah, people following along want to keep up with my present situation, not the past. Then I think, wait, there’s stuff I’ve seen, things I’ve done which could be interesting, maybe even useful, to someone. And then I remember, man, it is difficult to commit the past to printed words. It involves self revelation, self exposure.
The future? Well, that’s always on my mind. Last summer was when my oncologist predicted I had 2-5 years left to live. So, okay, let’s do the arithmetic … 2 minus 1, 5 minus 1 … shit, do I only have 1-4 years now? I will ask for an update on July 18th. I’ve been feeling so incredibly well recently, I feel like I could live for decades! I’m picturing myself doing just that — “positive imagery” — not scientifically established as helpful, but certainly not harmful. The medications I’m on right now are newish, so maybe their track record has improved since last summer? Maybe there are even newer, more fabulous remedies in the pipeline? Again, I will ask on the 18th.
Here are a few random, current thoughts: (1) Last week my favorite bartender, Jesse, who has seen me both with and without hair, asked how I was feeling. I said … really fantastic! … and she replied … that makes my heart explode! Which made my heart explode!
(2) Listening to a radio show yesterday, a successful screen writer mentioned that he came from a whole family of great story tellers. OMG, I thought, that’s what it takes! It takes a whole family! My family? story telling? — yeah, not one of our greatest, strongest points. We mostly sit around talking about politics, economics, and post-modernism. Oh, and that’s an improvement; when I was growing up, parties at our house consisted of two dozen math professors milling around the food table, discussing the intricacies of a particular theorem. Note: I have an old friend who’s father was also a professor, and he proclaimed … Oh, I LOVED department parties! They ALWAYS ended up with people dancing on tables. … Yep … His father was an English professor, not a math professor! The point of this anecdote … perhaps story telling in this blog would be effortless if only my family had been the table dancing sort.
(3) Below is today’s hair, with approx 3 liters of ‘product’ calming it down.
Ha! Received a LARGE, surprise camel in the mail! (Actually, I suppose it’s rather small relative to other camels.) The cats do NOT know what to make of it, probably because it has funny clumps of camel hair on its camel humps.
A week ago was DF and I neglected to post an update here on the blog. Several friends contacted me, worried … so, my apologies. My blood numbers were unremarkable. The important tumor marker went down a hundred points (yippee) but my liver function numbers both edged up a bit (hmmm). My NP said not to worry about the liver numbers, and I’ve been heeding her advice.
The camel arriving in the mail was much more interesting than my trip to DF. : )
Tomorrow, Tuesday, is DF again. Wait, whhaaaaaa? Ohhhh, yep, yep. Yes indeed. Sometime I have to stop and remind myself that these regular, frequent appointments at Dana Farber are the plan, for the rest of my life. Forgot for a moment … it’s a good plan.
Nothing cancer-wise to report until after the Tuesday visit, so deciding whether of not to write more about the past. My big, beautiful, medical past : )
In 2010, things at Emeline were getting tricky. My daughter and I were living upstairs, and mom and dad were living downstairs in the first floor apartment of the two-family home we shared. Sharing the Emeline Street house was great, but dad was not doing well; he had Parkinson’s disease and was declining. It was in September that year that I had learned that my cancer had metastasized. Prior to that my brother, Bobby, needed stents inserted into his arteries because of arterial narrowing (he had had a heart attack at age 39). It was in December one evening, that the caregiver who helped my dad was leaving, and he asked me to look in on my mom — she doesn’t look too well, he said. After he left, I found mom in the bathroom throwing up.
Mom was never a complainer, and she insisted she’d be okay. But like my brother she had had a heart attack years before, so I was worried. She shuffled weakly back to her bedroom and looked miserable, holding a throw-up bucket under her chin. Her left arm was numb. Dad was calling me into his room. He asked about mom, so I said that she seemed to have a stomach ache or something, although I suspected something worse. (Mom NEVER got stomach aches or bugs, ever.) But dad said, Okay … well, your mother usually gets me some cheerios about this time in the evening. I said, Oh yes, I’m on it dad! I got a bowl of cheerios with milk and sugar and started the slow task of spoon feeding dad. A minute later mom was moaning so I had to run back to her room across the hall. Luckily dad was pretty much deaf, so he missed the moaning. I asked mom what I could do, and she said that she was fine. We both knew that wasn’t accurate. I suggested that we should go to the hospital because she might be having a heart attack, but she adamantly refused. ‘I am NOT going any where NEAR a hospital.’ From the next room, Dad asked, could I have some more cheerios, please? Oops, sorry dad, mom was not feeling too great, here’s another spoonful. I ran back and forth between the rooms a dozen times; then, dad was fed and comfortable in bed, ready sleep. Mom on the other hand got worse. I suggested the hospital again and she was furious. I called both my brother and sister — seemed like a situation they should know about. I believed mom was likely having a heart attack but she did NOT want to go to the hospital. Neither sibling knew what to do … we all knew mom’s wishes.
Think, think, think. Ah, I’ll call Wendy, she always knows what to do in a medical emergency! Wendy said, CALL ROSIE, she just went through this with HER mom! Thankfully I got Rosie on the phone right away: try suggesting to your mom that you just call the EMTs, that they know a lot more than either of you, and they might be able to diagnose her, but that they would NOT force her to go to the hospital if she didn’t want. I recited the same words to mom. Much to my surprise mom said, oh okay. (Thank you Rosie!) After calling 911, the EMTs arrived in three minutes, and after examining mom for thirty seconds they said she was having a heart attack. They also said they would not force her to go to the hospital, but that they thought it was a good idea. Mom agreed. Wait, huh?
After securing overnight help for dad, and getting my daughter off to her father’s house, I followed the ambulance to the hospital and stayed with mom in the ER until the doctors wheeled her off to surgery. A stent was inserted to clear her blocked artery. Heart attack fixed. By 1 AM, mom was in a room, recovering, feeling and looking much improved. We chatted and mom admitted, with a smirk, that yeah, she knew she might be having a heart attack at home, but figured she’d either wake up in the morning or not. … … … Such a pragmatic, mom thing to say! That’s how she was. She added, it was only because of the awful nausea that she agreed to come to the hospital, ANYTHING to stop that nausea!
When it was time for me to head home, and I promised mom I would be back early, early in the morning with her medications, her iPad, her hearing aids, etc. Gave mom a kiss goodnight, and as I was exiting the room mom declared, with a chuckle … Ya know? Our family is NOT the picture of health.
Today both tumor markers were slightly down from last month — okay, I had been hoping they’d be cut in half, but good enough — and both liver function numbers are still normal. And THAT means that after the long drive home, I made a martini and sat on my porch, feeling downright sparkly.
More thoughts later. Now, I’m going in for a bath — BECAUSE I HAVE A BATHTUB!